Caregiving 101 — Even in trying times, you can choose joy

I sat in the parking lot, alone in my car, staring blankly through the windshield as tears rolled slowly down my cheeks.

I’d accomplished what I set out to do. So why was there a lump in my throat and a pain in my chest and why did my hand refuse to turn the key in the ignition?

My dad was in mid-to-late stage Alzheimer’s. Mom had been caring for him in their home in St. Louis, with my sister helping out from nearby.

We had made adaptations as the disease progressed. Mom wrote messages on a whiteboard, reminding Dad where she was and when she would be home. We purchased a tracking device for Dad to wear, so we could find and rescue him if he got lost on his daily walks. We labeled things, even the shampoo and toothpaste because he kept using them on the wrong body parts.

But Dad had regressed to about the level of a 2-year-old. He was strong, active and pleasant in demeanor, but could no longer do even simple tasks alone. He confused two longtime chores, dropping the mail into the recycle bin and taking the trash to the mailbox.

He could no longer be left unsupervised, anywhere. When he stayed in the bathroom too long, Mom found him shaving his forehead.

She was exhausted. He was restless. My sister found an Alzheimer’s day-care center and we thought it would be the perfect solution. It was a cozy setting, with many of the activities Dad had always enjoyed. But after one visit, he refused to return.

Meanwhile, I earned my Dementia Care Certificate at Johnson County Community College. I drove to St. Louis, bursting with new information and ideas for dealing with Dad. My first goal: convince him to attend the day care.

I used every trick in the book, including reasoning, sweet talk, sternness, music, distraction and deception. I finally finagled Dad into the facility, settled him in a chair and stayed to observe. The other patients were having a grand time. The staff was fabulous. Everyone was chattering happily — except for my daddy.

Aphasia was one of the first symptoms he had suffered, and by this time Dad’s speaking vocabulary was reduced to only a few words. He sat in the chair, an anxious look on his face, gesturing futilely as people tried to engage him in conversation, unable to utter a reply. It was painful to watch his frustration, and I sneaked outside to my car.

But I could not drive away. I phoned my mom and sister and we reached a decision. I went back inside and got my dad and returned him happily home. The home care situation remained daunting and draining, but our choice felt right and good.

As caregivers, we all have decisions to make. Some are easy; some are excruciating. Sometimes they bring better circumstances; sometimes they do not.

When my father-in-law (FIL) and his dog came to live with us last spring, I began writing Caregiving 101 columns for The Star. I wanted to encourage other caregivers. The hundreds of your responses confirmed what I suspected: Each situation is different, but there are things we have in common and things we can learn from one another.

Many of you are in difficult positions. We can’t always choose our circumstances, and they will not always be happy. But we can always choose how we respond to them. Will you choose tumult or calm? Melancholy or contentment? Despair or joy?

• Acknowledge your circumstances. They may be pleasant or harsh. You may feel happy or distressed. You may need to sit in your car and cry for a while. But then — get out and do what you need to do.

• Recognize that you have value, and so does your patient. Hold each in high esteem and your caregiving will become a gift to both of you.

• Realize that you always have a choice. If your situation is tough, don’t despair. Choose your response to it. Choose joy.

There’s been another change in our circumstances. FIL has moved into a veterans’ home in St. Louis. This is not the way I imagined our situation would play out. St. Louis is too far from Shawnee. FIL left, and his (leaky) dog remained with us.

With FIL gone, I have chosen to discontinue the Caregiving 101 columns. Whatever your response as I ranted and raved about my successes and failures as a caregiver, thank you for joining me in the journey. And, if you think of it, please pray that I’ll follow my own advice and choose joy about the dog thing.